Catherine Lyons --A beacon of light to mark five heathy years
Catherine Lyons
A beacon of light to mark five heathy years
[img]http://www.myfriendsforlife.com/temp/catherinelyons.jpg[/img]
Festive lights atop Angel Island in San Francisco Bay are usually only seen during the year-end holiday season. But this past summer, for 15 magical minutes, a bright beacon lighting the sky delighted 9-year-old Catherine Lyons.
She watched from a sailboat in the harbor with friends and family, including her mother, Mary Russell, father Dan Lyons, and 6-year-old brother, Will. The night represented a milestone for the Brookline, Mass., family, marking the fifth anniversary of the end of Catherine's treatment for neuroblastoma, an aggressive cancer that begins with a solid tumor in nerve tissue, then spreads throughout the body.
This Angel Island miracle began five years earlier when, in the midst of challenging treatment, Catherine received a card from a family friend in San Francisco telling her that a light in her honor would be placed on the island's well-known holiday tree. As the fifth anniversary approached, Catherine wanted to see the inspirational light, even though her family's vacation was scheduled for the summer.
For someone who had taken on her daughter's cancer, finding a way to stage an off-season light show seemed possible for Russell. She enlisted the help of Angel Island officials who, instead of re-creating the actual holiday tree, beamed a spotlight from a jeep on top of the island.
As with others who have experienced cancer, this family knows there is always a chance the disease will return. But Catherine's five years of good health seemed a miracle worthy of celebration considering her prospects in 1995.
Catherine's cancer was diagnosed after a series of unexplained pains in her back and legs and an overall lack of energy progressed to an inability to walk. Upon learning Catherine's chance for surviving her advanced cancer was less than 10 percent, Russell's first reaction was to "let her go" without the potential pain of treatment. But with her husband's encouragement, the couple decided to consider an investigational treatment brought to their attention by Dana-Farber pediatric oncologist Scott Cameron, M.D.
Like many clinical trials, this one did not involve new drugs or treatments, but rather new ways of using existing treatments, according to Cameron.
Pediatric oncologists Lisa Diller, M.D., Stephen Grupp, M.D., Ph.D., and Howard Weinstein, M.D., had pored over past treatment information for neuroblastoma looking for clues that pointed to more effective care. The new protocol they proposed called for surgery to remove the tumor on one of Catherine's adrenal glands, high-dose chemotherapy, radiation, and two stem cell transplants.
Based on information from Cameron and Diller and consultations with friends and family, her parents concluded that if Catherine could survive the intensive treatment, she could survive the cancer.
Russell and Lyons called on that hope often during the long months of treatment when Catherine suffered periods of extreme illness. They struggled with a demanding routine of taking turns being with Catherine, caring for their son, and trying to stay in touch with work - Lyons in real estate, and Russell for Reebok Shoes.
Russell, who describes herself as a "doer," found inspired ways to help her daughter. Always a conventionally spiritual person, Russell engaged a special healer who taught Catherine how to "coax" cancer cells out of her body and into a crystal. The nightly ritual gave the child a strong feeling of control.
In another unconventional move, Russell persuaded clinicians to honor Catherine's request to see the tumor that had been removed from her adrenal gland. The child viewed the tumor as small and defeated, trapped in a laboratory jar, another powerful image that has been useful when Russell has bouts of worry about the cancer returning. The practical and optimistic Catherine often reminds her anxious mother that the cancer was "in the jar," so she shouldn't worry.
Catherine's family keeps in touch with other families whose children were on the same protocol. There are hearing, sight, learning, and growth challenges, but the group continues to thrive. According to Cameron, this regimen is now commonly used at Dana-Farber and Children's Hospital Boston, and is under further scrutiny to determine its long-term effectiveness.
The protocol was recently published in the prestigious Journal of Clinical Oncology, with Diller and Grupp as senior authors and colleagues from Dana-Farber, Children's Hospital, Massachusetts General Hospital, and Children's Hospital of Philadelphia as co-authors.
Russell, who knows her tough, can-do attitude sometimes taxed Catherine's caregivers, continues to support them and other families by bringing dinner every Sunday to the transplant unit at Children's. Staff often ask Russell and Lyons to contact parents of other patients to offer support and hope. Sometimes Catherine tags along.
(Dana Farber Paths of Progress, Fall/Winter 2000)
A beacon of light to mark five heathy years
[img]http://www.myfriendsforlife.com/temp/catherinelyons.jpg[/img]
Festive lights atop Angel Island in San Francisco Bay are usually only seen during the year-end holiday season. But this past summer, for 15 magical minutes, a bright beacon lighting the sky delighted 9-year-old Catherine Lyons.
She watched from a sailboat in the harbor with friends and family, including her mother, Mary Russell, father Dan Lyons, and 6-year-old brother, Will. The night represented a milestone for the Brookline, Mass., family, marking the fifth anniversary of the end of Catherine's treatment for neuroblastoma, an aggressive cancer that begins with a solid tumor in nerve tissue, then spreads throughout the body.
This Angel Island miracle began five years earlier when, in the midst of challenging treatment, Catherine received a card from a family friend in San Francisco telling her that a light in her honor would be placed on the island's well-known holiday tree. As the fifth anniversary approached, Catherine wanted to see the inspirational light, even though her family's vacation was scheduled for the summer.
For someone who had taken on her daughter's cancer, finding a way to stage an off-season light show seemed possible for Russell. She enlisted the help of Angel Island officials who, instead of re-creating the actual holiday tree, beamed a spotlight from a jeep on top of the island.
As with others who have experienced cancer, this family knows there is always a chance the disease will return. But Catherine's five years of good health seemed a miracle worthy of celebration considering her prospects in 1995.
Catherine's cancer was diagnosed after a series of unexplained pains in her back and legs and an overall lack of energy progressed to an inability to walk. Upon learning Catherine's chance for surviving her advanced cancer was less than 10 percent, Russell's first reaction was to "let her go" without the potential pain of treatment. But with her husband's encouragement, the couple decided to consider an investigational treatment brought to their attention by Dana-Farber pediatric oncologist Scott Cameron, M.D.
Like many clinical trials, this one did not involve new drugs or treatments, but rather new ways of using existing treatments, according to Cameron.
Pediatric oncologists Lisa Diller, M.D., Stephen Grupp, M.D., Ph.D., and Howard Weinstein, M.D., had pored over past treatment information for neuroblastoma looking for clues that pointed to more effective care. The new protocol they proposed called for surgery to remove the tumor on one of Catherine's adrenal glands, high-dose chemotherapy, radiation, and two stem cell transplants.
"I won't ever forget Catherine because she was one of those patients for whom we had no promising standard treatment option to offer," says Cameron.
Based on information from Cameron and Diller and consultations with friends and family, her parents concluded that if Catherine could survive the intensive treatment, she could survive the cancer.
"I read hope into this trial - hope for a new millennium - of a completely new cancer treatment that just could work," Russell said.
Russell and Lyons called on that hope often during the long months of treatment when Catherine suffered periods of extreme illness. They struggled with a demanding routine of taking turns being with Catherine, caring for their son, and trying to stay in touch with work - Lyons in real estate, and Russell for Reebok Shoes.
"I made sure I was there every morning to see Catherine and to check on her [blood cell] counts," recalls Lyons.
Russell, who describes herself as a "doer," found inspired ways to help her daughter. Always a conventionally spiritual person, Russell engaged a special healer who taught Catherine how to "coax" cancer cells out of her body and into a crystal. The nightly ritual gave the child a strong feeling of control.
In another unconventional move, Russell persuaded clinicians to honor Catherine's request to see the tumor that had been removed from her adrenal gland. The child viewed the tumor as small and defeated, trapped in a laboratory jar, another powerful image that has been useful when Russell has bouts of worry about the cancer returning. The practical and optimistic Catherine often reminds her anxious mother that the cancer was "in the jar," so she shouldn't worry.
Catherine's family keeps in touch with other families whose children were on the same protocol. There are hearing, sight, learning, and growth challenges, but the group continues to thrive. According to Cameron, this regimen is now commonly used at Dana-Farber and Children's Hospital Boston, and is under further scrutiny to determine its long-term effectiveness.
The protocol was recently published in the prestigious Journal of Clinical Oncology, with Diller and Grupp as senior authors and colleagues from Dana-Farber, Children's Hospital, Massachusetts General Hospital, and Children's Hospital of Philadelphia as co-authors.
Russell, who knows her tough, can-do attitude sometimes taxed Catherine's caregivers, continues to support them and other families by bringing dinner every Sunday to the transplant unit at Children's. Staff often ask Russell and Lyons to contact parents of other patients to offer support and hope. Sometimes Catherine tags along.
(Dana Farber Paths of Progress, Fall/Winter 2000)
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